Utility Navigation

You are here

My MS diagnosis story: "It took me a long time to realise that it was okay not to be okay"

11 July 2017

When Carla was diagnosed with MS in 2008, she felt like she’d lost control of her “body and future.” Here she explains how the Kubler-Ross Curve helped her come to terms with her MS diagnosis and to stay positive.

MS is difficult to diagnose and can be quite a jigsaw puzzle!

My first relapse in early 2005 was optic neuritis and, after making a full recovery and having a fairly non-descript MRI, I was discharged, waiting almost four years for a diagnosis. In limbo, I carried on, though the acronym had already been presented as a possibility.

In October 2008, having been married for just two months, I woke up with numbness and pins and needles in my legs and feet. After some to-ing and fro-ing, and a particularly painful episode of Lhermitte’s Sign, I went private for a quick diagnosis. I wish someone then had explained the Kubler-Ross curve to me. Elisabeth Kubler-Ross was a psychiatrist working with terminally ill patients and wrote a book in the 1960s, which outlined the stages of grief. Since then, this curve has morphed into a change model, used during difficult transition experiences such as a diagnosis, redundancy and so on. The stages are shock, denial, anger, bargaining, depression and acceptance, and this is not a linear process.

With diagnosis, I literally went through every emotion possible. It's one thing to think something, but quite another to know it. As I sobbed in the car park, I knew I was the same person going into that consultation as I was leaving it, but the locus of control had changed. I no longer felt I had control of my body or future. So in order to regain control, I took time off work, and used reputable websites to research MS.

I know of other MSers who are either reticent about MS or who, more firmly, want to ‘keep calm and carry on’, and this demonstrates how everyone receives diagnosis differently. Over the years, external factors have knocked me to the beginning of the curve and I've gone around the cycle repeatedly, e.g. due to a change in neurologist, new medication, etc. I also realised that my loved ones were going through this too. The thing to remember is that this is all completely and utterly normal. It took me a long time to realise that it was okay not to be okay with how I felt about it. No one can claim to be the ‘I’m-over-it’ police!

I’d like to think that by not accepting my MS (after all, how can you fight something you accept?), I at least acknowledge its presence. I haven’t named it (I know some people do) but I do call it my bully – something I don’t particularly like but which I live with, and whilst of course still having some tricky days like anyone else, one thing that hasn’t changed is that I am still a very positive person.

If I could go back in time to the point of diagnosis, I wouldn’t change too much other than perhaps being introduced to the curve earlier and to let myself know that there is no wrong or right way to react. Just like with our MS, we are all individual.